How Are You?

Sorry it has taken so long for me to get around to this. Doing anything is difficult when you’re depressed. But more on that later.

For now, I’m going to give you a general update on my health. The itching went away by itself, about 3 weeks after my last post. I was taking 2 antihistamines a day but I don’t know how much of an effect they actually had since I started taking them before I went to see the doctor. Does it usually take 4-5 weeks for antihistamines to work?

But I’m explaining things out of order. The blood tests that I mentioned in my last post, all came back normal (as is always the way), so I know it wasn’t cancer, or thyroid issues, or MS, or any of the other things that I was worried about. What it did mean, was that the doctor didn’t know what was going on (as is always the way). She did, however, ask about my M.E.

I think that since “long Covid” has become a thing, doctors have suddenly become more familiar with M.E (also known as post viral fatigue) because it shares so many symptoms and similarities (ikr, who’d’ve thought🙃). The doctor asked me when I’d been diagnosed, and I told her that I hadn’t officially yet. So, she said that she would put in a referral for me. She told me that it would need her to fill out an evaluation form, and that I’d also need to have another set of bloods done and a urine test. She called me the next day to ask me some questions about how my illness effects my day to day life. But at the time I was having kind of a brain foggy day and, since I’ve been living with this condition for so long, I’ve learned to adapt to my limitations. I find it difficult to determine how much the illness impacts my life since my measurement of “normal” has shifted so much, so I basically ended up telling her that I’m actually doing quite well and live a relatively normal life. It was only when I was talking to my fiancé afterwards about it, that I realised it still impacts my life every day because I have to make adaptations to live. If I were healthy, I wouldn’t need to make all of these allowances in order to just go about my day to day business. I intended to tell her all of this when I called her back for the blood and urine results, but unfortunately I haven’t been well enough to go ahead with any of that.

The 4-5 weeks worth of itching really took it out with me, and then there was an incident just before Christmas where a muscle spasm landed me in A&E. I’ve been weak ever since and the holidays in general are always a stressful occasion for me. So basically, I’ve been in a flare for about two months, with the odd ‘okay’ day.

Now (as mentioned at the start) my mental health is really starting to be affected. Not just because of my physical illnesses, the pain, fatigue and insomnia that comes with all of that, but also because of the state of the world as it currently is. I’ll go into that in more detail another time though, it deserves its own post.

I am also currently at my highest ever weight. Even back when I was almost completely bedbound, I never got up to this weight. Part of that is because, back then, I had to look after myself, so if I couldn’t get out of bed, I couldn’t eat very much. But now I have a fiancé who cooks all my meals for me, so that means that I’m still eating loads of calories but not burning them off, so my weight keeps rising. I have just bought myself a treadmill, which is something that I have wanted for as long as I can remember, and I’m planning to start walking, a little bit at a time, to build up some strength and stamina, without having to go outside.

I can’t think of anything else to tell you at this point. Basically, everything is crap.

Live and Learn

The New Year has rolled in and I feel obligated to mark the occasion. Most people I have seen, have chosen to go one of two ways with this. They either choose to disregard the past year and focus on the one ahead (mostly hoping and praying that things will get better without them having to do anything), or they are complaining about what a terrible year it was and how unfair life is.

I am a realist. I don’t believe in “searching for the good in a bad situation”. Nor do I believe in narrowly focusing in on tragedy because it outweighs any good that has happened. Nor ignoring things just because they are unpleasant.

We live in a delicate web of circumstances. Everything effects everything else. Every situation that arises has been brought about by situations that came before, and will bring about situations after it. Assigning blame, feeling sorry for ourselves, lamenting, or denying will do nothing to change what has come before or where we find ourselves now. What we can do is observe, study, analyse, learn and thereby become better people, better equipped to handle future situations. We can change the way we behave and react and these things will trigger change in our lives. But I digress…

In order to “Review my 2020″, I thought it would be best to create a “Pro/Con” list. This will keep things in perspective and give me a more realistic idea of how to approach 2021.

PRO’s

1. Got engaged.
2. Got a car.
3. Graduated with a 1st Class Degree.
4. My employer was hugely supportive despite me not having worked at the company for long.
5. Was given a secondment so that I could work from home.
6. Had time to decorate the house.
7. Spent more time on hobbies and passions.
8. Spent more quality time with fiancé and cat.
9. Got to know myself better.
10. Haven’t lost anything I can’t get back.

CON’s

1. Was unable to properly start my new job due to being ‘high risk’.
2. Barely left the house since March.
3. Weight increased to my highest ever.
4. Health decreased dramatically.
5. The British public showed themselves to be more stupid and selfish than I thought they were.
6. Was unwell for the holiday season.
7. Have barely seen the family all year.
8. Had driving test suspended several times over.
9. Didn’t get another cat as planned.
10. Increased fear, anxiety, depression.

Dealing with the virus and the way it has changed the world is an unprecedented incident that nobody could have predicted (except the scientists who have been warning the public for years that we were on the brink of a devastating pandemic). I feel as though I was better equipped than most, since I am well practiced in managing feelings of fear and anxiety, I am an introvert and therefore don’t miss the lack of social interaction (living with one other person and a cat can sometimes feel too crowded for me), being a chronic illness sufferer means that I am more in-tune with my body and my health, it also means that I have endured periods of being housebound before (at least I’m still able to get out of bed and move around the house during lockdown), I have studied and worked in the biological field, frequently working under aseptic conditions (I know how to clean my self and my surroundings effectively, and I know which products will kill viruses and which will only kill bacteria, and I know what to look for on products that make such claims. Not to mention the general knowledge I have about how viruses, testing kits and vaccines work, so I know what to believe and what not to believe in the media) and finally because I am a prepper – I am prepared for scenarios where we lose all electricity and running water, I can more than handle wearing a mask and washing my hands repeatedly.

I won’t share all the things that I have learned this year but I have learned a lot, I have changed a lot, and I will continue to adapt to what comes next. All in all, this past year has been true to my general attitude towards life – It wasn’t great but it could have been a lot worse.

No Offense but…

Everybody is offended nowadays. And that’s fine, you have a right to feel your feelings. You even have to right to express your feelings to others. But the way that you do that is important.

When I was younger I was impetuous and opinionated. I was judgmental and loved to point out peoples flaws and tell them how to fix themselves. I knew that people hated me for this and I didn’t care because I was “telling it like it is” and “they just can’t handle the truth.”

As I grew up (physically and emotionally), I realised that I did care whether people liked me or not, and I had enough flaws of my own that I should not start throwing rocks. I still had a lot of the same opinions but I started to keep them to myself.

As the world became a more horrendous place, and I became more self-aware, it became increasingly difficult to keep my thoughts inside. So I began to pick and choose my battles. I would speak out against things that directly effected me, and I ignored things that would cause me more hassle than they were worth. A selfish way to live, maybe, but energy efficient. I also changed the way that I expressed myself so I sounded less combative and it was less likely to become an argument. It didn’t always work, but I tried.

And then Covid happened. Fear and anxiety are at an all time high. People are less distracted and worn out by their monotonous jobs. Politics is the topic on everybody’s lips, and things are getting heated. More and more people are publicly and aggressively stating their beliefs and, in doing so, inviting others to publicly and aggressively disagree with them.

I am not exempt from this. With everything that has been going on, ‘bandwagons’ are being created so that people can push their particular agendas, and it is demanded that everybody either jump on the bandwagon or be crushed beneath the wheels. I do my best, where I can, to give a different opinion, another option, an alternative perspective, and more often than not, I am immediately vilified and the rowdy rabble begin sharpening their pitchforks hungrily.

And so we arrive at the crux of my argument. As much as you have the right to be offended, and express your hurt feelings, I have the right to express my opinions. Of course, there will be some occasions where a person is being deliberately offensive, or combative, or discriminatory, and that should definitely be addressed, but even under those circumstances, there is an effective way to do it. Have you ever been told not to lose your temper at a bully, because then they know they’ve won? If you calmly, and logically discuss their opinions, you’ll very quickly be able to tell if they are just trying to irritate you or not. This approach also prevents you from becoming a bully yourself by attacking someone who you assumed was being deliberately offensive, when really they are just confused, or looking to understand, or in some cases, just have a different opinion to you.

And you know, it’s okay for people to have different opinions. There is no unilateral ‘right’ or ‘wrong’. People are shaped by their life experiences, by society, by propaganda, by religion, by culture etc. etc. They will form different opinions based on these things and that is okay. The way we will evolve as a species is by being open to listen to different opinions and try to understand them. Even if you eventually decide that you still disagree, that is okay too.

The best way to avoid being combative or aggressive when expressing opinions, is put things in terms of your own perspective. I.e, In stead of saying “X is good, Y is bad, and anybody who thinks Y is good, is a bad person”, say “I think X is good, I believe Y is bad and I don’t understand those who think otherwise”. Obviously you can use your own vernacular, but using phrases like “I think”, “I believe”, “In my opinion”, “If you ask me”, etc., shows that you understand that not everyone will have the same opinion as you and you accept that. It shows emotional maturity and might even open up an interesting conversation with points of view that you hadn’t considered before.

Some people may still be offended, and this is also okay. You might find that you are still offended by others opinions, especially if they have directly addressed you in their disagreement. If you are a person who is quick to anger, then it is good practice to walk away from your computer or phone for a few minutes to calm down before responding. We have all said things in the heat of the moment that we didn’t mean, and the internet is a ruthless place. Don’t put yourself in that position, it will only make things worse.

Once you have calmed down, reread the comment to make sure you haven’t misread, misunderstood, or misinterpreted. Often people will read between the lines and make assumptions and draw conclusions that were not intended by the original poster. Read the words they are actually saying and take them at face value then, if you still don’t understand, ask for clarification. If you think they have misunderstood what you said, then go ahead and clarify for them. All of this should be done in a calm and clear way, and use the same personal perspective as before. In stead of “You’re wrong”, “You’ve misunderstood”, “You’re talking nonsense” etc., say things like “That doesn’t seem right to me”, “Let me explain differently”, “I don’t understand”. The most important part of all of this is not to force them to change their mind or bully them into submission, but to try and understand their opinion.

Also, there is a time and a place for profanity. When somebody starts overusing swear words (especially when they are specifically directed towards another person), it denotes a lack of emotional intelligence and inability to form rational thought. It destroys any credibility they have and basically nullifies their opinion since they don’t seem to know themselves why they believe it. It usually happens because someone is unable to control their emotions and they feel vulnerable because of that. The only way they can regain control of the situation, is to make you more angry and upset than them. Don’t be one of these people, and don’t waste your energy arguing with them, they have lost their reasoning skills. If they are actually smart people, they will return when they’ve calmed down and talk to you properly.

Finally, I leave you with the most important lesson:

You cannot control other people, only yourself and your own reactions. If you are offended by something, it is not the fault or the responsibility of the other person, it is for you to understand why.

If we continue the ‘bandwagon’ culture of “join us or be destroyed”, then we will end up in a tyrannical censorship-society where the people who really are being oppressed or discriminated against will be unable to speak out.

So, one more time for the people who are offended by this blog post; all opinions are valid.

Knees Bent, Arms Stretched, Ra Ra Ra!

I weighed myself the other day. I knew that I put on weight since the virus thing had us all trapped in our homes, but it happened so gradually that I hadn’t realised how much I’d actually put on.

I haven’t been this heavy since I was almost completely bed-bound, which makes sense considering that the last few months I’ve just been going from bed to couch and back to bed again. I am still eating relatively well, which is probably the only reason that I’m still as healthy I am, but without daily exercise it just isn’t enough to keep the pounds off.

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I’ve been thinking for a while about doing some exercise videos for people with M.E. Usually we’re just told to do Yoga or Pilates or just some gentle stretches. Yoga and Pilates are too much for my energy levels, and while stretching is all well and good, it’s not increasing my strength.

So I have in mind what I want to do and how I want to do it but, as with most of my bright ideas, the actual “doing it” part keeps being delayed. I want to be very careful and very precise about what I say and do, so I want to write a script out for it. I also don’t have much space in the house, so I need to figure that out. And we all know that nobody watches badly framed, poorly lit videos, and I really want these videos to help people so I need to make them good.

Maybe I’m just scared that whatever I produce will never meet the standards of the image I have in my mind, so it’s easier for me to just not do it…

I’ll let you know if it ever gets done.

New Normal

A large part of keeping myself ‘healthy’ has to do with monitoring my condition on a daily basis and adjusting activity levels accordingly. A certain amount of daily activity is necessary for keeping my joints limber and my blood circulating properly. Too much activity causes P.E.M (Post Exertional Malaise) but total inactivity causes pain and O.I symptoms (Orthostatic Intolerance) so I need to find a balance between the two.

Back when the world was normal, I used to go to University and had a couple of part-time jobs. This meant that I was on my feet a lot (not a lot for a healthy person, but a lot for someone like me), used a lot of brain power, and sometimes did some heavy (not really that heavy) lifting. I was able to maintain my health while doing these things, and if I started to feel a flare coming on, I could take it a little easy (take the lift in stead of the stairs, avoid anything too strenuous, put off complicated work for another day etc).

Post Covid though, the most exercise I get in a day is going up and down the stairs to use the bathroom. I have also suffered from several flares (as mentioned in previous blogs) which may or may not be illness/diet related. Basically, I’m not sure where my baseline is any more because I’m not living a regular life. This means that I don’t know how to adjust my activity levels. Sometimes I will get a specific kind of pain in my lower legs or hip flexors (or both) that I recognise as a sign that I need to go for a walk, but other than that, I’m just guessing.

When I feel unwell I know I need to either increase or decrease my activity, but choosing the wrong one will make me feel worse. It’s not a good position to be in. I need to get some semblance of regular life back.

Everything Happens for a Reason

I am a person who believes that everything happens for a reason. I have to with everything that has happened to me. If I didn’t then the universe is just cruel and unfair and what’s the point in struggling against the tide? But in stead of hopelessness, I chose to believe that, although I may not know why, and may never know why, the things that occur in my life have to happen in order for some other event to happen that creates balance in the universe. This belief brings me peace of mind and allows me to carry on trying when everything is telling me to give up.

5 years ago I went back to college to do an Access course so I could go to University. Halfway through my college course I got a very severe flu-like illness and never fully recovered. I got M.E. I was still able to complete my course (just about), but was unable to get the work experience required for the University course that I wanted to do. I was rejected from all four of my University choices and left pretty distraught. I was on the verge of giving up when my favourite University offered me a place on a different course. It wasn’t what I wanted to do, but it was close and it could lead me to what I wanted to do, so I accepted and went to University.

1 year of that course and my health had deteriorated to the point where I was almost completely bedbound. I was still managing to get the work done (and was getting good grades) but my tyrannical course leader said that if I didn’t show up for class then I would be kicked off of the course. If I was kicked off of the course then I would be kicked out of my campus accommodation, making me homeless. I somehow managed to get a meeting with the leader of another course who said he’d be delighted to take me on. I ended up loving that course and that department and they supported me with my illness so I was able to graduate this year with excellent grades.

If I had been accepted onto the course that I originally wanted to do then I wouldn’t have wasted a year on a terrible course and I would have graduated last year and been in work this year when the virus hit. And what was that course that I wanted to do? Child nursing. Yep, if I hadn’t gotten M.E, I would currently be a Nurse in the NHS right now.

Just saying… everything happens for a reason.

You Don’t Have to do Anything

In this Covid-19 pandemic that we are all currently living in, there seems to have arisen a new social pressure to be productive and achieve. There’s a lot of emphasis of what new skills you will have acquired once the lockdown is lifted. What renovations you will have made to your life and your home. I have seen and heard many people say something similar to “You finally have the time to do all of those things you always said you never had the time for”, and while this may be essentially true, there is no reason why you should now be obligated to do those things.

The thing that these people are overlooking, is that this situation is unprecedented for most of us, and that what we are actually living through a massive shared trauma. For these people, their go-to coping mechanism is to keep busy so that they don’t have to sit with, and acknowledge their feelings about what is going on around them. These people will likely find that eventually they will run out of things to keep themselves busy, or that their thoughts will overpower their actions so that their ‘keeping busy’ tasks are no longer able to distract them. These people are often in denial about their true feelings, and their underlying insecurity requires them to validate their avoidance coping mechanism by shaming others into doing the same things as them.

A common feeling that is shared by many of us right now, is one of helplessness or uselessness. There is nothing we can do and nothing that can be done for us. We have no control over the virus or how our governments choose to react to it. Sometimes, these feelings can bleed into our other activities and soon we find ourselves thinking, what’s the point in doing anything if there’s nothing we can do. This apathy can quickly spiral into depression where we find ourselves wanting to do something but feeling too miserable and down-trodden to act on it. This then circles back to our original feelings of helplessness and uselessness.

Anybody who has suffered with depression before will recognise this kind of cycle, and if you’ve been lucky enough to get help, you’ll have your own coping mechanisms to dig your way out or to manage your feelings. But for a lot of people, this will be a new sensation.

For people who have never had to deal with this kind of depression and isolation, it can be terrifying not knowing what to do. Desperate to connect with people and know that they are not alone, these people go to social media where they are bombarded with all of the things that the “productive” people are accomplishing. They are asked “What have you been up to?” “What have you done?” and suddenly they feel like they have to justify themselves and defend their lack of activity. This will send them down one of two paths. Either they will force themselves to be productive, even though their heart isn’t in it, or the feelings of shame will confirm for them that there is something wrong with them and that they are lazy, useless and wasting precious time etc.

The first outcome will lead to frustration, exhaustion, possibly anger, and no task attempted will be given full attention or dedication and so won’t live up to the standards that the person is now expecting of themselves. This will eventually lead them to thoughts such as “I can’t do anything right even when I try” and a return to depression. The second option reduces self-worth and increases anxiety and depression as well as isolating them further by making them believe that they are the only people feeling this way. These feelings could easily lead to self-neglect or self-harm very quickly.

Depression is not an easy thing to overcome, especially if it’s your first time fighting with the beast, and I’m not going to pretend that I have an answer for you on how to break out of the cycle I described earlier. Honestly, the reason I’m talking about it in the first place is because I am stuck in it myself. But from my experience and knowledge I can present to you these thoughts and observations. I hope that when you read them, you believe them and that they can bring you at least a little relief if not show you the path out.

• Processing trauma takes time and energy and is a different process for all of us.
• This is something that has never happened to us before so there is no correct or incorrect way of dealing with it.
• Just because a lot of people are doing something, does not mean that you should be doing it too or that it is the right thing to do.
•  Acknowledging your feelings is the first step to accepting them.
• You are the authority on yourself. Trust yourself, believe in yourself, focus on yourself. Don’t worry about anyone else. Their opinions can’t hurt you.

Fear

To listen to me read this blog post, please click here: Reading “Fear”.

It’s been a few months since I’ve posted here and that’s mostly because I’ve been well and living a normal life. Actually, I’ve been living a busy life. I’ve been finishing off my final year at university, writing my thesis, and I got two part-time jobs. I felt like I didn’t have much to say about my M.E since I was living a life basically symptom free. But then the Coronavirus hit.

Before you start reading, I want to be clear that I don’t know whether or not I had the virus, they’re not exactly handing out test kits here, all I can do is tell you what I’ve been experiencing.

It started with my legs aching. Since my “recovery” I no longer experience symptoms daily, but when I do over exert myself or drift from my diet, my legs are the first to let me know. So I shrugged it off as “I just did too much today and need to take it easier.” But the pain persisted day after day, getting worse each time. I was back on pain killers or else I wasn’t able to sleep. Then I got a cough. I’m not a person who gets coughs so I was immediately suspicious. It wasn’t a bad cough but it was persistent. I began isolating as the government suggested. The cough never got better nor worse but the leg pain continued to require pain killers. After 1 week of showing symptoms, the government said I could go back to work (this was before lockdown). The afternoon before I was due back I was massively conflicted. I could go back to work, I should go back to work and if this was the virus then I should be safe, but if it wasn’t the virus and I just had a cough then my immune system is even more damaged than usual and I’m at an even higher risk of catching it. But I’d already taken a week off to isolate, I can’t just keep taking time off just in case, can I? I went for a walk with my partner to mull things over, and I was in far worse condition than I thought. I was getting PEM symptoms almost immediately after stepping out the front door. I was panting, my heart was racing, my legs felt like lead and my whole body slouched, unable to hold itself upright.

I called work and explained my worries. They were very understanding and told me that if I felt safer at home then I should stay there. If only all employers were so empathetic. Soon after that, lockdown was put in place and although my place of work stayed open (they are working on disinfection techniques and studying the virus itself), I did not consider myself to be an essential worker (part-time lab assistant with little training to carry out work autonomously), so I am staying home indefinitely.

I don’t know how much of my symptoms was caused by the cough, by stress, by the potential virus, or by lockdown resulting in less time outside or exercising, but my condition got worse. The week after lockdown started, I woke up finding myself unable to walk. This has only happened to me a few times in the past and only when my illness was at its worst, so you can imagine how truly terrifying this was. I had to ask my partner to help me to the bathroom and back to bed. After 8 months of being symptom free, suddenly not being able to walk was soul crushing. I tried not to dwell on it but the thought stayed with me, “What if 8 months is all I get and now I go back to being ill again?” I started asking myself whether I used my time wisely or if I could have done more. I wondered if I would look back in a couple of years time and say “I should have done x, y and z while I had the chance.” But I rested and I slept and slowly, as the day went on, my strength came back a little. The next day I was able to tackle the stairs and the day after I wanted to go out for a walk.

My strength returning with rest said to me that my body is trying to get better but the lack of exercise is causing my muscles to seize up and weaken, so I should try to keep myself active within my limits. Now I’m making sure to get out for a walk every day, but I’m back to never leaving the house without my cane and a short lap around the park is the most I can manage. Every day I seem to be getting a little stronger and am less exhausted when I get home, so that tells me my hunch was right, my body needs the exercise, fresh air, sunlight, in order to stay in working order. My legs aren’t hurting so much now either but I’m still wondering if I’ll get back to full health again or if my cane is coming out of retirement permanently.

Thank God we are still allowed out of our homes but I am afraid that we may not keep this freedom, and I’m not sure what I’ll do then. I’m also afraid that lockdown will continue for longer than we are expecting and I don’t know if I will continue to improve or stay at this level of wellness. Just like everyone else right now, I’m afraid but trying not to panic.

I hope you are all well.